Joanne Quinn's youngest child, Patrick, was diagnosed with autism spectrum disorder when he was 4 years old.
"I was blindsided when we got the diagnosis," Quinn said.
She knew something was amiss with her third son. Patrick could talk before he turned 3, but he couldn't answer why or how questions or control his impulses.
Quinn had an adult cousin with autism, who routinely rocked in a corner, isolated from the rest of the world. Patrick wasn't like that, Quinn thought.
But then a doctor diagnosed Patrick with the neurological disorder, which interferes with a person's communication, social skills and sensory responses.
"When I look back, knowing what I do now, the signs were there, but I didn't know how to read them," Quinn said. If she had, Quinn says she would have moved Patrick out of his private preschool and gotten him special supports right away. "I think something more structured would have been better," Quinn now says.
Education, health and child advocacy leaders in Rhode Island are calling for more children such as Patrick to be correctly diagnosed as young as possible, so that resources can flow to them and their families early on, said Elizabeth Burke Bryant of Rhode Island's Kids Count.
A review of autism released by the group today pushes for increased training and awareness. This afternoon, the issue will be highlighted at a news conference held at Patrick's school, Meadowbrook Farms Elementary in East Greenwich.
This year, school officials say 605 children have been diagnosed along the spectrum, which includes mild to severe autism, Asperger's syndrome, and pervasive development disorder. A decade ago, just 30 children in the state were diagnosed with autism spectrum disorders. But a broadening of the definition and a growing awareness have contributed to the dramatic spike in numbers nationwide, experts say.
"With increased knowledge and increased prevalence of autism, there's a need for the best training possible for people who work with very young children, so they can help identify these children," Bryant said. "We know that early interventions produce much better outcomes for these children later on."
Ideally, children would be diagnosed at their 18-month or 2-year checkup, when symptoms of the disorder typically emerge, said Dr. Yvette Yatchmink, a developmental and behavioral pediatrician at Hasbro Children's Hospital.
"Many clinicians are adept at recognizing the more extreme forms of autism, but we understand this is a spectrum disorder now, and they may not be comfortable diagnosing milder cases at such a young age," Yatchmink said.
The review finds many Rhode Island children aren't diagnosed until age 6, and are therefore missing several years of occupational, physical and speech therapy the state could provide them for free through early intervention programs.
"It's complicated," Yatchmink said. "Sometimes it's wishful thinking that the problems will go away. Other times, pediatricians don't want to worry families if there's not going to be a problem."
It's not only doctors who need more training; daycare providers, preschool teachers and parents also need to identify signs of autism, said Cynthia Holmes of the Health Department's voluntary early intervention program.
About 2,700 children, from infancy to 3 years old, and their families used services provided by the program last year. These include up to 25 hours a week of home-based therapies and outside programs to teach autistic children social skills, usually by interacting with children who don't have developmental delays in daycare centers.
"We focus on supporting the whole family, because a diagnosis like this can be difficult and affects everyone," Holmes said.
The number of children in early intervention has been climbing about 8 percent a year. Last year, the program's budget was $12 million, Holmes said.
"But studies have shown that early interventions save money later on, because less has to be spent when the children enter school," Holmes said.
It costs about $20,000 a year to educate a child with autism, compared to $15,000 a year for other disabilities and $7,500 a year for mainstream students, according to the state Department of Education.
The Kids Count report also calls for more resources for older autistic children and further investigation into findings that black and Hispanic children are underrepresented as autistic and overrepresented as retarded.
Quinn is now the executive director of the Autism Project of Rhode Island, which provides training for families and educators, and Patrick is a third grader. Quinn knows her son is lucky, because for the past four years, Patrick, now 8, has been part of a cutting-edge demonstration classroom where teachers and educators visit to observe the latest teaching techniques.
"He still struggles sometimes, but he's in a regular third-grade classroom for part of each day," Quinn said. "We know there are children out there who still haven't been correctly diagnosed, and we want to get the word out there that today there is a lot that can be done for these children."
For more information on the autism report, visit www.rikidscount.org
